Todays Feeding Tube Topic: Understanding Life with a Feeding Tube - Explaining a day in the life/daily routine of tube feeding and all it requires

Day to Day Life with super tubie CJ is exactly that Day to Day. Don't dare plan ahead b/c then it wont happen. We could be having a regular normal day and in one minute have to be running gathering kids and getting to Omaha Childrens. Our most famous time of doing that was in middle of night. The joys of loading three kids and going on a 2 hr rd trip at 9 to 10 in morning and being in er in middle of the night. A Good day: Is unhook him from his night time feed. Give him his medicines. Will offer breakfast food. Then Give hime some water through G button. Then hook him up for his first morning feed. Then unhook him. Get him ready for Therapy. Take him to therapy. Pick him up. Go home. Give him another deal of water and 2nd feed. Then it will be lunch time. Now that is fun no matter what day. He throws tantrums EVERY meal b/c he Wants to eat. For the most part we let him. But then we have to watch him chew it all up and if he accidently tries to swallow then we have to deal w/ gagging or throw up. Otherwise we have to deal w/ him spitting out the food in front of everyone. We have gotten used to it. but if your not around us alot you can get discusted by it. We have a hard time w/ it..b/c in a sense it is food wasted. B/c it isn't being digested by anyone. But in another sense its not wasted b/c He is keeping what muscles he has that works to keep working by chewing. He is understanding the different tastes. and trying to be as "normal" as he can. Meal times are the one of the most heartbreaking times of the day. Then it is nap time. After nap time is another dose of water and his third feed we hook him up for. after that its play time w/ siblings. Then its supper. and Another dose of water.(all by G tube) Then its time for medicines. Then time for bed. So Then we start a new feeding tube bag and get him hooked up for his night time feed. Now Thats a great day. Those are the days we cherise and love :) More days than not we have to add to that. Getting up in middle of night to change his diaper b/c of night feeds he soaks the bed through what diaper can hold. Sometimes still we have to do the whole bedding b/c second diaper wasnt enough. Or If we have been dealing w/ consipation and pushed a lot of meds to get it going....it starts really going. So its over everything. Whether in his bed if he was sleeping or in house wherever he is at. If he is having his normal constipation problems we have to watch him cry and scream in pain for day to days depending on length of episode. It's horrible the amount of pain he gets in. The medicine helps but working on a balance which is hard. Have to deal w/ extention coming out and feeding whatever it is around(Got a belly belt so that should help :) ) If playing have to worry about him pulling his whole Gtube button out. Wouldn't be a huge problem but insurance only covers so many and its really not enough. There are days he looses all energy and we don't know why. And he will just lie there. At first he will moan in pain. and rock and anything else he does to comfort himself. but when it gets real bad he lies there like he is dead. it is scary at that point. b/c sometimes we have to check his breathing b/c he is barly moving or blinking or anything. When he is playing he falls alot so we just always hope he don't fall enough to get hurt. That is a glimpse into our days :) We just love it when we have a great day. And remember our good days when were going through a bad one.